Fibrillary glomerulonephritis

kkmommy Me, me, me!!!! I was diagnosed with this Jan 2015 by a kidney biopsy. It was handled by Keck USC Hospital, Dr. Michael Koss, then verified by Cedars Sinai Hospital renal pathology. It is indeed a rare bird. Less than 50 in the world ever diagnosed. You have been told correctly, there is no cure, no treatment, no research because there are so few people with it.

I am under the care of a nephrologist. Every three months there are lab tests run. I follow a strict renal diet. My eGFR has been declining, and tomorrow I find out what yesterday's tests show now. My protein intake is limited, and I take blood pressure meds [2 calcium channel blockers named Verapamil and amlodipine besylate] plus furosemide to help my system release excess fluid.

By the way, welcome to May Clinic Connect. You have found a great forum of caring people, who will share their experiences and stories of their health journeys.

What is your eGFR, and what led your drs to do a biopsy?
Ginger

Has anyone found a cure for this ? Anything helps the protein from leaking into the urine

I have Fibrillary Glomerulonephritis!

Welcome @lianelady. I'm sure fellow members living with fibrillary glomerulonephritis (GN) like @jennifer208 @danab1968 @kkmommy @gingerw @vhussey29 @va63 @danab1968 will appreciate connecting with you.

Liane, when you were diagnosed with GN? How is your kidney function?

@lianelady Welcome to Mayo Clinic Connect! It is a rarified atmosphere to be diagnosed with the fibrillary glomerulonephritis. My kidney disease is also from that glomerulopathy issue, but involves collagen deposits in my kidneys.

We're here for you when you have questions. Heck, any time you need support we are here for you to vent away. I know how helpful it is to not feel alone. Who is around you for a support team? I find it is important to have people in your corner, and please reach out to them.

Here is an article from the National Institute of Health about your condition. Questions? Concerns? Ask away, please! https://rarediseases.info.nih.gov/diseases/12740/fibrillary-glomerulonephritis
Ginger

I was diagnosed with FibGn Jan 2018 from a biopsy at Mayo Jacksonville. I have done 8 rounds of rituxan over the last 4 1/2 years. I also have a rehamatological immune inflammatory disease that doctors aren't quite sure what it is. I have been on immune suppressants this whole time, along with 2 different blood pressure meds. My urine is checked every 4 weeks and blood tests every 3 months. I am very lucky and i have surprised my nephrologist. I am in partial remission and my kidney function is stable.

Liane, it's quite common to have multiple autoimmune conditions. This is one story that I'm glad you've surprised your nephrologist and that you kidney function is stable!

My husband was diagnosed with fibrillary glomerulonephritis 2 yrs ago. His kidney function has declined to 16 and we are going to peritoneal dialysis classes soon. As a "hail mary" we have request rituximab treatment, which the nephrologist said won't work:(
How have others been treated and was treatment successful?
Thank you

@marknkary77, sorry I can't be of more help in your situation. My experience with the disease was more than 65 years ago, and medical science has long ago left me and my classmate behind with scientific advances that only the best nephrologists can help you with. I hope you can get an appointment with a Mayo Clinic center in Rochester MN, Jacksonville FL, or Phoenix AZ. I can give you no better advice than that. Martin

I also was recently diagonesd with this disease and dont understand why there isnt more info on it